Speaker 1: 0:15

Hi, this is Umida Shtari, and.

Speaker 2: 0:16

Natasha McElhone. Our guest today is Suzanne O'Sullivan. Suzanne is a neurologist, clinical neurophysiologist and writer. She has been a consultant since 2004 and has been at the National Hospital for Neurology and the Epilepsy Society since 2011. Her specialist interests are in epilepsy and improving services for people who suffer with functional neurological disorders. Suzanne qualified in medicine in 1991 from Trinity College Dublin. In addition to academic publications in her field, she is an author of award-winning non-fiction books, each focusing on her medical casework.

Speaker 1: 0:57

Her 2016 book it's All in your Head True Stories of Imaginary Illness won the Wellcome Book Prize and the Royal Society of Biology's General Book Prize for an accessible, engaging and informative life science book written for a non-specialist audience. Her book the Sleeping Beauties and Other Stories of Mystery Illness was shortlisted for the 2021 Royal Society Science Book Prize.

Speaker 2: 1:22

We talk about Is there an epidemic of overdiagnosis?

Speaker 1: 1:27

Extending the definition of disorders.

Speaker 2: 1:29

The rise of ADHD and autism diagnosis.

Speaker 1: 1:32

The impact of this on either end of the spectrum.

Speaker 2: 1:36

Has this had a positive or negative effect on mental health?

Speaker 1: 1:40

Medicalizing natural mood swings and differences.

Speaker 2: 1:43

Illness as identity.

Speaker 1: 1:46

Cancer screening and proactive surgery.

Speaker 2: 1:48

Let's analyze.

Speaker 1: 1:54

Hi, this is Omid Ashtari.

Speaker 2: 1:55

And Natasha McElhone, and with us today we have Suzanne.

Speaker 3: 1:58

O'Sullivan.

Speaker 1: 2:00

Hi Suzanne.

Speaker 3: 2:01

Hi there.

Speaker 1: 2:01

Thanks for writing your very timely book. Hi Suzanne, hi there, thanks for writing your very timely book and we would like to maybe start by talking about the definition of the title of your book, which is overdiagnosis.

Speaker 3: 2:12

So the Age of Diagnosis is about medical overdiagnosis and I think it's super important. I'm glad you asked to explain what that is from the outset, because I think when people hear overdiagnosis, particularly when it comes to something like mental health problems, they think that that means the diagnosis is wrong or that somebody has nothing wrong with them. That is not the definition. So essentially, overdiagnosis means that diagnosis may well be entirely right but it's not benefiting the person. So perhaps the harm of being labeled by the diagnosis is outweighing any benefit that comes with being diagnosed.

Speaker 1: 2:44

Makes sense. One thing that you do quite well in the book is you delineate what feels like two sources of overdiagnosis in particular, one being the extending of definitions of things like autism and ADHD, and then the availability of diagnostics at large and how they affect different disorders. Let's delve into the extending definitions part first. So why is there such an explosion of autism and ADHD diagnoses?

Speaker 3: 3:13

Yeah. So just to start with this kind of idea of extending disease and illness definitions as a kind of overarching concept, first because it doesn't just affect something like autism or ADHD. We're doing it in every field of medicine. So we have a sort of chronic underdiagnosis problem. So in schools, you know, kids were never recognized as having special needs when I went to school and I'm sure a lot of children were neglected. Similarly, people didn't go to the doctor with mental health problems when it was stigmatized. But equally people went to the doctor too late with things like diabetes or hypertension. So what has been happening in medicine for several decades now is we've been gradually tweaking what it means to have multiple different problems. We lower the level at which high blood pressure becomes high blood pressure. We lower the level at which you know an abnormal blood sugar becomes diabetes and at the same time as doing that, you know an abnormal blood sugar becomes diabetes. And at the same time as doing that, we've been gradually tweaking what it means to have behavioral or learning problems like autism and ADHD. So if I take autism as an example, so when that concept was developed in 1943, it was described as extreme autistic aloneness. So it was the person who described it described 11 children and said that they were no more interested in people than they were in bookshelves or filing cabinets. So these were very, very isolated children who really didn't communicate at all. And then in the 1960s, 20 years later, someone doing study of children with mental health problems in South London looked at these children and said you know what? I think they have this thing called autism, but they have it in a milder form. So we haven't been recognizing it. So let's look for this diagnosis in milder forms in children with other mental health problems. And they created the concept that autism is a spectrum disorder. So now we've gone from extreme autism aloneness to a spectrum from mild to severe.

Speaker 3: 5:04

Then over the subsequent decades multiple more tweaking happens. Now this always happens by specialist committee, so it's not because a genetic finding has uncovered something or a scan has shown something. Committees come together and they say you know what, if I can find this in a milder form, I think I can help more people. How can we adjust these criteria? So they'll slowly adjust the age. So at one point in time you can't have autism unless you're obviously autistic before the age of 18 months, then it's 30 months, then it's early childhood until we get to how we are now, which is you potentially don't have to show any autistic features until adulthood to get the diagnosis. And then someone will say you know what we're diagnosing.

Speaker 3: 5:46

A lot of boys, maybe more girls, need to be diagnosed. They'll start by scrutinizing girls for the features and if they don't find them, they will then adjust the features to make the diagnosis possible in girls. So, to give you an example of that, girls in school tend to be more sociable than boys. So rather than looking for girls who are exhibiting this aloneness per se someone will say, well, maybe we're looking should look for girls who flip from group to group but don't make very deep friendships. So you can see how, with each of these changes is well-intentioned, it's trying to find people who could be helped, but it's also dramatically changing the concept of what autism is to go from something that is extreme aloneness to someone now who could be married with a family, working a good job, but could still be diagnosed as autistic today. And of course, no one can say what's right or wrong, because there's no biology that defines these things. Society defines them. Society decides what it's willing to accept as normal or abnormal.

Speaker 2: 6:51

How does that impact on services and I suppose understanding. I get that there's maybe more social acceptance and more tolerance, if you like, and understanding created, but is there a downside?

Speaker 3: 7:05

Yeah, tolerance, if you like, and understanding created. But is there a downside? Yeah, so I think there are downsides for everybody concerned in this, unfortunately, that, and I. This is why I write about this. This is because this is what concerns me. So the changes I've just described mean that, you know, 50 years ago, autism affected one in 2,500 people. Now it affects about one in 100 children and in some places in the US it's one in 36 children and, believe it or not, in Northern Ireland, it's one in 20 children have been diagnosed with autism, so we've seen massive increase in numbers.

Speaker 3: 7:38

Now I fear that that is having a negative effect at both ends of that spectrum. First of all is having a negative effect at both ends of that spectrum. First of all, the idea of diagnosing all these extra children is really well-intentioned and you can see, it seems to make so much sense, which is that you find kids who have some difficulties in school, you support them and then ultimately, they will flourish in life. What's happening to those kids? Well, I would say that if we stand back and say, is this working? It's really looking very scarily much like it's not working. Because if it was working, if you go from very few children being diagnosed to one in 100 or one in 36 being diagnosed and 27% of kids in school getting special accommodations such as extra time and exams, if this was really the right thing to do, you'd expect to go to university or early work years and see much happier, better adjusted people. We're seeing the absolute opposite to that. What we're seeing is that one in five young adults now has a mental health problem, and mental health problems are rising in young adults and young people more than any other group. So the first thing I'd say is the people for whom this was designed to help don't show much evidence that they are benefiting from it. But my other big concern, and possibly even a bigger concern, is how it's affecting the original severe autistic people who would have fitted into the category of extreme autistic aloneness. I'm a neurologist and I look after people with brain diseases, so these are the people I see most often in my practice.

Speaker 3: 9:14

First of all, the changing of the concept of what autism is in the public arena means I don't think a lot of people know what severe autism even looks like. Now I think you know it's being trivialized by these. Milder diagnoses are making people think that they know what autism is, when they really don't if they have never seen a person with severe autism. It's massively attracting resources away from those with severe autism. So the people most in need are fighting for resources with people who you know have lives and families and jobs, and that's a very difficult situation and it's trivializing what it means to have autism to really keep kind of creating milder and milder versions of it.

Speaker 3: 10:00

I spoke to one woman who has a son who has very, very severe autism and when she tries to get him into autism schools or educational facilities. You know they're mostly catering now for people with normal IQ and severe autism. People often have lower IQ, so they can't get into these schools. So we've got at one end of the spectrum. The people most in need are struggling to get resources and recognition.

Speaker 3: 10:26

The other end of the spectrum, well, they're not doing particularly well either, and that's my concern, and I think we're not. We're doing that thing that people do when they're dieting and it's not working. I'm speaking about myself now which is you just keep thinking well, there must be something wrong with this. You know, you're dieting and you're dieting and you're dieting and it's not working, and you're incapable of standing back and saying well, you know, I must still be eating too much or clearly I'm still doing something wrong, you know. Instead, you just keep throwing the same kind of thought processes at the problem and not recognizing that it's not working. And I think we're doing that with autism because people are still fighting to diagnose more people without ever having proven that there's value in diagnosing more people.

Speaker 2: 11:12

For anyone who hasn't read your book or may not get to it.

Speaker 3: 11:16

I just think it might be worthwhile illustrating what the category of people who got the original diagnoses for autism so I tell the story of a boy in the book called Elijah I keep calling him a boy, but he's 30, but he's severely learning disabled. When he was born, you know, his mom told me his mom she talked about how long it took for her to accept that things weren't going quite right with him. He didn't seem to be developing as he should. She saw him as a perfect baby. But over the course of the first kind of two years of his life she began to realize that there were things he just wasn't doing that he should be doing. So she took him to a psychologist and she learned pretty quickly what autism, in a young child like that, looks like. They don't display imaginative gestures, so, for example, pointing is an imaginative gesture, so he wasn't pointing or interacting with people. And the psychologist who saw him very quickly recognized that he wasn't doing these imaginative things and diagnosed him with autism.

Speaker 3: 12:18

Now, as Elijah got older, it became obvious that he had a very low IQ, he was severely learning disabled and he exhibited lots of the typical features of autism. So he is essentially has no interest in people whatsoever. No, he loves his mom, he loves his dad, he loves his sister, but other than that he really has no interest in people. He has things that he's intensely interested in. He's very interested in these little fluorescent caterpillars strange as it might sound, but there's something about the texture and color of these caterpillars that he cannot get enough of these caterpillars. So at all times you know he's an adult.

Speaker 3: 12:56

Now he has an iPad in his hand and a collection of his fluorescent plastic caterpillars, so he becomes intensely interested in things and he just wants to do the same thing over and over, and even as a child. This is a little bit like all children, but I think he did it more than others just sat and watched the same video over and over again. I do recognize most children do that, but he was particularly fixated on certain things. He also had what they call stimulatory behaviors or stims, so for him that's bouncing. I mean, he's now a man in his thirties. He's extremely tall, well-built man, but all he likes doing is bouncing on his trampoline in his own house, and if his routine is upset, he gets incredibly upset. So the kind of thing that you would have in his routine that would be upsetting is, once he's finished his dinner, he has to clean his plate immediately, and that doesn't matter if he's in a cafe or he's at home. The plate has to be cleaned.

Speaker 3: 13:52

And if that plate isn't cleaned, he will get extremely emotionally upset and that means striking out. And when he was a small child that was difficult. He's now a man who's much bigger than his mother, so the striking out is really really hard for the family to manage. But they have managed. You know they're an amazing family. His mom is just such a wonderful mom and so in love with her son and says wonderful things about him Like I love the son I have. I don't need him to be some kind of special genius child. You know this is the son I have and this is the son I love.

Speaker 3: 14:28

And she's worked really hard to make sure he's not institutionalized and that means that she has to have techniques in place when he starts melting down. So meltdowns happen in severe autism. So she will speak to him very firmly and create distance between her and him. She has protocols she puts in place and when she does these in public she finds that people are just staring at her like thinking what is this? What is this that's happening? But what's happening is really typical of autism.

Speaker 3: 14:58

I tell a story in the book of when she was on a bus and he was having a meltdown and she put the protocol into place and she realized that every single person on the bus and he was having a meltdown. And she put the protocol into place and she realized that every single person on the bus was staring at her. So she just turned around and said to them you know, this is what autism looks like. It's not what you saw on the TV last night. This is autism, and her and many families like her feel that their children are being made invisible by the way that autism is talked about now.

Speaker 1: 15:23

So we contrast that with, say, tiktok video of a high functioning adult celebrating an autism diagnosis right, and these people are then also, I guess, part of research studies, and how does that affect the development and definitions of all this?

Speaker 3: 15:40

Yeah, I mean, I do find the celebrations of being diagnosed. I do understand them because I realize that people are struggling and I realize that answers give people relief and I don't want to take anything away from someone that they're genuinely benefiting from. But I also think there's something tonally not quite right about these celebrations. It's hard to imagine them occurring for any other medical situation, but that you're correct a big problem with autism. Now, I don't really believe that anyone thinks autism is a single thing. It's probably a set of genetic disorders that produce a particular set of behaviors. But if we want to understand someone's problem like Elijah and there's lots of people like Elijah then they need to be identified and put into research trials so they can be studied together.

Speaker 3: 16:28

But what's happening now is we're not allowed to divide people into severe, mild or moderate autism. So people like Elijah are being put in the same research category as people who have full-time jobs and have gone to university and have families. As people who have full-time jobs and have gone to university and have families, it's very hard to believe these people will have anything really in common in research. So as long as this happens, you know the hope for people like Elijah to find answers as to what is wrong with him becomes less and less.

Speaker 3: 16:59

The more we include much milder and milder and milder forms of autism in research. It's also becoming. The assessments to diagnose autism are also very difficult. So what's also happening now is that people who haven't been properly assessed and who are self-diagnosed are being allowed into research. So the research is dumbing down essentially. So there are and this is always the problem I come back to is you know, the concept of autism was created to help people who really, really need help, and I fear that those people are less likely to get the help now as we soften the concept of what autism is.

Speaker 1: 17:38

Can you talk us through the same world of ADHD to an extent, because I assume that was a lot narrower as well in the beginning.

Speaker 3: 17:46

Yeah, all the same rules really apply. So you know these conditions. They become conditions when they enter the Diagnostic and Statistical Manual of Psychiatric and Psychological Illness essentially encyclopedia of what counts as a mental health or behavioral problem. And it used to be just a hyper reactivity of children that disappeared in adolescence. So that was the concept of ADHD when it was first kind of brought up was, you know, it was essentially hyper reactivity in children and it got better with maturity.

Speaker 3: 18:18

But obviously we can see now that that concept has softened enormously over time so that now we have adults who are diagnosed, who don't have any hyperreactivity and didn't display any particular symptoms in childhood, because the criteria have been adjusted so much that there really is very little relationship. You have to wonder what is the relationship between adult ADHD and childhood ADHD, because childhood ADHD is hyper reactivity male predominant usually disappears, not completely necessarily, but as a person matures, everyone matures out of things, whereas adult ADHD is mostly inattention and it's actually a growing number of women have it. So we're kind of beginning to change the concept of what ADHD to such an extent it's nothing at all to do with what it was at the beginning, and again I always come back to the same point, but this concept was created to help a certain set of people, and now other people are using that label, and it may well be helping them, but what about the people it was?

Speaker 2: 19:29

created for. You also point out in the book that sometimes these diagnoses, even though the people who have been diagnosed may say that they're not mild sufferers, but let's, for the sake of this argument, call them on the mild end of the spectrum, because they are perhaps high-functioning and able to have relatively normal lives, and that's not to discount their own experience or difficulties. But you say in the book or I intuit that you say that there's this almost inverse ratio to diagnosis, to improvements in mental health, that these diagnoses don't necessarily elevate these people out of their pain cycle.

Speaker 3: 20:13

Yeah, I think that, unfortunately when so there's always a balance. When a person is diagnosed with something and this could be anything, it could be a physical illness or mental health problem, learning problem there's always a balance between how much you get from the diagnosis and how much that diagnosis might take away from you. If you're very disabled by a disease, illness, whatever, then you stand to gain a lot from being identified as a patient and getting treatment. But if you are at the milder end of the spectrum and again you know, your point is well taken, which is that what is mild Well, for this I'm going to say mild is means you're able to go through mainstream education, you're able to get a job. If you're at that milder end of the spectrum, you have less to gain from treatment because you're already functioning at a reasonable level. You may well have struggles and you may well need help with them, but the amount you have to gain is smaller than someone who's severely disabled. But the the big problem here because it might offset those little treatment gains. So what I mean by that is that once you are labeled as having an illness, disease, mental health problem, it doesn't matter what it is. It can sometimes focus you so much on your symptoms that it actually exacerbates the symptoms.

Speaker 3: 21:36

This is the same. This is not just about problems like autism and ADHD. You know, if you believe that you, you know, during the COVID pandemic I thought I had COVID multiple times. I never, ever did, but every time I thought I had it and I paid attention to my body, I felt things weren't right. I was sure I had it and ultimately would be proven wrong. It's the same if you tell someone and kids worry me more than anything for this if you tell them they have a social communication problem called autism and that it causes, you know, inability to communicate, to have good eye contact, and also means that you're not very good at certain things but maybe you're good at other things. Just that knowledge can focus you on the things that you cannot do and that reinforces them and amplifies them. And that's why I fear that diagnosis at the mild end, you know the treatment gains are being overshadowed by how it reinforces a person to learn that they have a medical problem which means they cannot do stuff.

Speaker 1: 22:42

I think what's worth mentioning here is this term which I hadn't heard before, which I think makes so much sense is illness. Identity that you introduce in the book and you know I'm a firm believer and I see it in many parts of my life, just as you said, where we become prisoners of stories that we believe too firmly about ourselves.

Speaker 1: 23:01

And you know, as Natasha always says, the brain has so much plasticity. You know you have so much ability to change. But if you have an illness, identity that's held very firmly, that obviously becomes a self-fulfilling prophecy. Maybe you want to explain the term and the corollary of it.

Speaker 3: 23:15

Yeah. So an illness identity really refers to the degree to which you kind of allow the illness to engulf, kind of allow the illness to engulf your personality and your identity. And people can unconsciously it's really important people understand this is unconscious, you know, none of this is happening in any deliberate way, but on an unconscious level you conform to the illness identity that you take on, you begin to sort of develop the symptoms that you expect in relation to that illness and that illness identity and if that happens it can stop you recovering. Like, how do you recover if your illness is your identity? How do you overcome your difficulties? You're going to lose your identity, and that's particularly the case if you're part of illness groups where belonging to that group depends so much on your illness identity. Well then, it's very difficult to overcome your difficulties.

Speaker 3: 24:07

And when we're talking about autism and ADHD, whether one says the diagnosis is correct or incorrect doesn't really matter. These are things that one naturally matures out of at least a little. Even Elijah, who I described who's got very severe autism and essentially has to be treated as if he's a child all the time, even though he's a 30-year-old man. He has matured to the point that he has a job emptying bins in a local business. As he has got older he's become more able to do things. But how does one mature out of those difficulties if they're integral to one's identity? And that's a real concern for me and in school children. I'm not advocating in any way that we go back to the days of my school years when you just ignored everybody and just let people get on with it. I'm advocating for struggling children should be recognized, but please don't tell them their brains are neurodevelopmentally abnormal. Allow them believe that they can have any kind of future. That's what I'm advocating for, and any kind of future means you shouldn't be labeled.

Speaker 1: 25:13

And the notion of the recovery identity right.

Speaker 3: 25:15

Yeah. So you have to know what recovery looks like in order to strive for it. So if you're really engulfed by your illness identity and you don't have this kind of idea of what a recovery will look like, well then how can you recover? And I worry that our, as more and more adults, especially highly successful, highly high profile, you know really sort of high functioning in every sense, even more than the average person. You know comedians and people who we all might aspire to be, are presenting themselves as autistic, with a great number of difficulties. Well then, how does a young person believe in recovery if they can't see recovery? So it's really important.

Speaker 3: 25:59

I tell a story in the age of diagnosis about a man who had COVID lung COVID. So he was struggling to recover from a COVID infection. He was an infectious disease doctor, so he was kind of floored by this. He thought he knew what infections were and when he didn't just like snap back after COVID, he was just completely and utterly sort of mystified by this. So he went down a kind of internet rabbit hole which is never a good idea and came across lots of other people who weren't recovering. And then he got caught up in this kind of group identity of people who believed that it wasn't possible to recover from long COVID, and they advised him to accommodate to his difficulties rather than trying to overcome them. And he did accommodate to them, but that just meant his symptoms continued. They didn't get worse, but they weren't getting better.

Speaker 3: 26:48

But he was a scientist, so he kept searching and he found another support group, and this group were called Recovery Norway. So they were a group in Norway who centered their identity around recovery. And when he met them he suddenly realized that he was so focused on his symptoms that they couldn't possibly disappear. His body was so wholly in his attention all the time that he was noticing everything and he realized he had to direct his attention towards the hope of recovery and away from his symptoms. And he did recover then. Of course I'm not saying everything is recoverable, but one has to know what one is striving for if one is going to recover at all.

Speaker 2: 27:26

So this is possibly a non sequitur which we can cut, but is there the comfort to a diagnosis that you can sit with and hold on to and you don't have to change that? Less is required of you possibly than the effort of moving out of a set of problems that feel insurmountable.

Speaker 3: 27:49

Yeah, I mean I've been struggling with this sort of. I do understand that when people get a diagnosis it gives them a lot of relief and explanation and, as you say, that they can just accept this is who I am, etc. And I've been struggling because I don't want to take a diagnosis away from people who feel that way and who are saying, okay, now I understand myself better, so I know what I can and I can't do and I don't. You know, I've been struggling to kind of understand how I can say what I'm saying and not take something away from those people. But the answer I came to the end was like why do we need a diagnosis? To be kind to ourselves and to understand what we can and cannot do.

Speaker 3: 28:33

I've heard a lot of stories of people saying well, I learned that I had this diagnosis and then I realized the life I'd chosen for myself was the wrong life and perhaps I should change my life. What I'd like to ask or find is a way for us to get to those conclusions where we're doing a bit more self-examination of our choices and learning how to forgive, because you know what you hear all the time when you're talking about this subject is people saying I got the diagnosis and then I realized you know, it's not my fault, I'm not to blame for any of this, and this is just how I am. How can we get there without a diagnosis? Because it should be possible for us to say this is how I am and you know what?

Speaker 1: 29:16

I'm not that bad, without being told that we have a brain disorder yeah, and the fear to an extent is that we are then putting labels on differences between healthy people, right. So we're basically looking at there's a difference between two adults. I have a lot of friends that are very different than I am right, and I'm not trying to again belittle any potential symptoms that people are experiencing, but I would say maybe one of my friends is higher functioning than me. There is a delta between me and them and I'm not trying to find a label for my shortcomings here, and the differences between humans just exist and the question is are we just over-diagnosing these differences to an extent?

Speaker 3: 30:03

Well, I think you know it would be very hard to say that we are not over-diagnosing normal differences. Now, I was in a discussion with someone recently who told me that and this is an ADHD expert who is involved in developing the concept of ADHD and she estimates that four in 10 people might have ADHD. Well, no, I mean, there's your answer there. You know, if four in 10 of us have ADHD, then we are definitely labeling ordinary things as ADHD I think we have. What we're failing to understand is there are important things that need to be in place for someone to have a medical problem. So I think there's a lot of contradictions in this conversation. So a lot of people with ADHD will say it's not a medical problem, it's not a problem, it's not a disorder. You know it's a difference and you know what for them. I believe they are right. They don't have a medical problem, they don't have a condition and they may well have a difference that I don't understand. I completely accept that. Then let's not use the term ADHD to apply to their differences and their difficulties, because the terms ADHD and autism were developed to help very specific people who nobody would say did not have a disability or an impairment, and I think that's what we need to do to get this right is to say okay, so there is a thing called autism. We don't understand it, it's probably not a single thing, but when it's bad enough it causes a kind of impairment which means a kid can't go to school. You know, you can't work, you can't do ordinary things. That's impairment and therefore that requires medical support and a medical pathway.

Speaker 3: 31:49

And then perhaps there's another bunch of people who have similar sort of traits, but they're not what I would call impaired, and impaired for me means you can't do ordinary things that every person should be able to do, like go to the shops, go to school. Those people may well have struggles and those people may well feel that the world is not set up equally for them. They may feel different than other people. Who knows how another person feels? We may need to be more mindful that there's a whole bunch of people in the world who are disadvantaged by the way the world is set up.

Speaker 3: 32:26

But let's not call that group ADHD. That's how I feel this needs to be resolved. Let's say, let's recognize that these people have a problem, let's try and figure out what could be done differently so that lots of people who learn differently can all feel equally supported, so that people who work differently can still all work and do the type of work that they feel is best suited to them. But it shouldn't be called ADHD. I think we need to have a better defining of what's a medical concept and what isn't, and we reserve the medical concepts for people who really definitely need them. Does that make sense?

Speaker 1: 33:02

That makes sense.

Speaker 2: 33:03

There's an interesting point you make in your book about biology and this desire to biology and this desire to well medicalize, um and this, this we move into other areas as well of what is medicine and what needs medical attention and what doesn't, and what's perhaps been decided by society as as a new criteria. Would you expand on that?

Speaker 3: 33:27

yeah, I think that well, I think I don't know why this happens, but it's one of the things I reasons I think it might be happening is particularly in kind of westernized, industrialized countries. You know we don't have a lot of support places to go and therefore we, you know where could? You know I'm not a religious person, but you know I grew up in Ireland, a very religious country, but you know the church has been slowly dismantled there for the best in many ways, but it used to be a place people went and you know families used to be more sort of kind of living all together in support of each other, and now there's not so many places to go now and therefore I think that there's an awful lot of sense to medicalizing difference and struggles and because there is one place you can still go if you want to talk to someone or get support, and that's a medical professional or medical facility. But to do that you have to have a medical problem in order to do that.

Speaker 2: 34:24

So that's one of the problems, we have to qualify.

Speaker 3: 34:26

Yeah, you have to qualify Exactly. You have to, so you can't go to your doctor and say do you know what Life is miserable? Can we just have a chat about it for a both sides?

Speaker 3: 34:34

And as a doctor, you often feel that people are desperate for these answers. They want it and you have the test now and you have the labels and you can just make this person happy by giving it to them. So I also feel like on the other side medical people, researchers, scientists we're a little seduced by what we can do Every time we change a criteria to make more people qualify for a medical category. Actually, people are quite grateful for that. That's quite a satisfying thing to do as a doctor, and if someone comes to see you and ask for diagnosis and you can give it to them, that's really satisfying too. So I think everything is driving both society and researchers and doctors towards this kind of labeling and medicalizing and, of course, researchers and scientists, et cetera. They are just part of society too.

Speaker 3: 35:41

They're not sort of acting independently.

Speaker 2: 35:44

I mean, I think lots of us have identified this as a trend, but what you point out is that, even though this is happening, it's not increasing people's well-being, and that's the interesting point that you continue to make.

Speaker 3: 36:01

Yeah, I mean, that's the whole point of overdiagnosis that you know it may or may not, it doesn't matter whether the diagnosis is right or wrong. The point is you're not getting better, and we can see that now in every sort of field that I describe in the book. So we've been talking about autism and ADHD and I'm saying, well, if it was working, we should be seeing happier, better adjusted adults, and we're not. But we're seeing similar sort of trends in things like cancer. So we're now screening for cancer and we have been screening for several cancers for decades. Now what should happen if you're screening for cancer? The assumptions again are fantastic, which is basically that you screen for cancer, you find cancers at the earliest possible stage, you treat them and therefore you keep people healthy. Now, if you look at that group of people who've been screened and in whom cancers have been found and you look at how they do, well, do you know what they seem to do? Okay, because the abnormal cells that have been found have been removed, they've been treated, they don't die of cancer. But we have a problem again when we stand back and we look properly, because what we see is exactly what we're seeing in the mental health arena is that we're treating loads of people with early screened cancers, but we have just as many people dying of late stage cancers. I understand it.

Speaker 3: 37:24

Probably that sounds weirdly counterintuitive to people, but the truth is that we you know what. We didn't even have an MRI scanner available. That was came into clinical use in the 1990s, and the reason I say that is to point out to people that we did not even know what the inside of a healthy person looked like until the 1990s. And you know, the scanners that we have now are just incredibly sensitive. What that means is, with all these amazing tests we have, we can find abnormal cells that you know what, have always been present in previous generations, but now we have the ability to find them, and when we find them, we don't know what they are. That's the truth of the matter.

Speaker 3: 38:06

So if you do mammography on women to screen for breast cancer, if you screen 2000 women this is there's many different estimates, but this is from a Cochrane review, which is an assessment of all available evidence so if you screen 2,000 women for breast cancer, you will save one woman's life from breast cancer and you will treat 10 women for breast cancer that never needed to be treated because you have found lots and lots of abnormal cells that would never have grown if you hadn't looked for them. But once you find them, well, what do you do? You can suggest to people well, do you want to wait a while and just see how this evolves? But most people, if they hear that they have cancer cells, would not want to do that. So everyone is treated with equal aggression.

Speaker 1: 38:51

And this is the second example of overdiagnosis that you mentioned the availability of diagnostics that are now, you know, technologically enabling us to have all these early ways to detect illnesses that may not even completely mature.

Speaker 1: 39:06

And this is both in genetic testing, which you mentioned in the book as well as with imagery, and for me this was a completely new field, very counterintuitive, especially in the breast cancer. Know what would have happened if not right. But you also said in the book that the statistics are being updated because some people actually opt out of doing the surgery. And you can see how many of those people actually develop the illness, especially with those genes specifically.

Speaker 2: 39:44

Tell us those findings. I thought that was really revealing and interesting.

Speaker 3: 39:48

People will be familiar with cancer genes. The very first cancer gene that was discovered was the BRCA gene, which increased the risk of breast cancer, but also ovarian cancer and some other cancers, but they're the two highest risk ones. That gene was discovered in the 1990s Now before that, a person who had a family history of breast cancer, for example, or ovarian cancer, might know that they had an increased risk. Now, before that, a person who had a family history of breast cancer, for example, or ovarian cancer, might know that they had an increased risk. But until you find the cancer gene, you know you're at an increased risk. But there's not an awful lot you can do about it, except perhaps be vigilant to your body and make sure that you're self-examining, et cetera. But as soon as that gene was found, it became possible to test people to see if they had inherited a high-risk cancer gene from their parent. And as soon as you started being able to identify high-risk cancer genes, it meant that you could potentially take action. But I mean that action is pretty drastic. So in the case of the BRCA gene a woman who discovers she has the gene and is judged to be at very high risk of cancer action means having a mastectomy, having your healthy breasts removed, your ovaries removed and your fallopian tubes removed. So it's absolutely, you know, phenomenally huge decision. You know phenomenally huge decision. Now, most of the people who make that decision make it because they have seen loved ones die of cancer. So you can really understand that.

Speaker 3: 41:17

I spoke to numerous people for the age of diagnosis in which you know they had seen. You know one woman I spoke to. Her mother and her grandmother had cancer simultaneously when she was just a teenager and her grandmother sadly died from cancer. Her mother survived but then a few years later got another cancer. So you can imagine if you then have a genetic test made available to you and you discover you have the gene and you have that type of family history, well, you would feel compelled to have that surgery pretty quickly, especially if you've got kids yourself and you're not just living for yourself but supporting others. But what often happens with these things is that the evidence, the fear that drives the surgery, precedes the evidence. So when that type of surgery started, say in the 1990s evidence. So when that type of surgery started, say in the 1990s, there were no statistical analysis to say, you know, because a cancer gene is a susceptibility factor. It's not. It's a risk factor. It doesn't mean you will get the cancer. It just means you have a higher risk than anyone else.

Speaker 1: 42:24

It is a potential.

Speaker 3: 42:25

Exactly and not every single person with the gene will get cancer. But you know, in the 1990s people who were identified as having this gene were in a very difficult situation because now they know they're high risk but they don't know how high. So people were being not compelled by others but compelled by the situation, I would say, into having surgery, compelled by having seen their family members die of cancer. But as the years have gone on these new technologies and this problem I always have with technology is when we get them first, we don't actually know how to use most new things. You know we're kind of saying, oh look, what I can do with this. And well, maybe if I try it, use it this way, I'll find out something else. So the genetics of things like cancer genes at the beginning it was all terribly not understood, but now we've had three decades.

Speaker 3: 43:15

So people who've had a family history of cancer, who have the BRCA gene, now are given really excellent statistical models of their likelihood of getting cancer. They may be told you've got a 90% chance of getting breast cancer. You can imagine in that situation why you might feel compelled to have the surgery. Somebody else will be told they have a 50% chance and they might sit more in the fence with it. But you've got to remember that all the first women who had this surgery they didn't have those statistical models, which means a lot of people probably had surgery who didn't need it and maybe others who needed surgery didn't have it surgery who didn't need it and maybe others who needed surgery didn't have it. But what happens next then that always fascinates me is now we have this thing that we can do and we want to see what else it can do.

Speaker 3: 44:00

So we start out with this genetic testing and we offer it to every single woman. Who or not just women, but women are more at high risk than men? You know, we offer it to every person with a family history of cancer. And then we think men, you know, we offer it to every person with a family history of cancer. And then we think, oh, I wonder, we're back to the autism story again. I wonder, can we help more people if we do more of this in different populations? So then we say, okay, let's offer this blood test to people who don't have a family history of cancer but maybe come from a group that are traditionally known to be high risk. So Jewish people are more likely to carry cancer genes. So now what's happening is trials are happening where they're extending this genetic testing to Jewish people who have no family history of cancer.

Speaker 3: 44:46

Now I'm a doctor and I do genetic tests all the time, and when I heard this first I thought, oh yeah, that sounds like a good idea. I, you know, even as a doctor, who's supposed to understand these things I didn't understand what the big problem there is. The problem is that all these statistical models have been developed in families with cancer. Nobody knows that these genes mean the same thing and will do the same thing to people without a family history. I spoke to a geneticist and she said to me well, how do you know that this gene in this other family doesn't cause cancer, because that family also has a gene that protects against cancer? Or how do you know that this family that all have the cancer, it's not just, it's the gene, plus the house they live in, plus the food they eat, plus the epigenetics at work absolutely and you know.

Speaker 3: 45:37

But if you then try and do this genetic testing, a whole bunch of other people you know there's. They have different lives, different diet, different houses and different genetic makeup. The gene might mean something different to them. So we're doing this thing now where we've got this amazingly clever thing and we're just now saying let's, oh, let's try it again, let's try it on a different group of people. And I don't think people all understand that. We don't understand how these things work as well as they think.

Speaker 3: 46:06

I'm also very interested in the preventative, this risk reducing surgery that people have, where they have mastectomies and ovaries removed, etc. I don't know that people understand, again, how little is not known about that. Because, again, if you do a lot of mastectomies in people at risk of cancer and then they don't get breast cancer, you think, well, great, you know that must be working. But what you don't really know is what would, as you've said, what would have happened if you left well enough alone. And one of the things I found most striking in researching this book was to discover, you know, that more than 50% of people in the UK and America have risk-reducing surgery when they discover they have a cancer gene, but, like less than 10% of people in Germany and Poland and some other countries have the surgery. So I kept trying to find out from other scientists and surgeons and doctors. Okay, so what happens to all those women in Germany and Poland? They're not having the surgery.

Speaker 2: 47:04

And yet they're not developing cancer necessarily.

Speaker 3: 47:05

Well, are they dying? Well, nobody could tell me Really.

Speaker 2: 47:09

These are things we should know surely Were you inclined to make? I know you don't make assumptions were you inclined to then deduce that there's a possibility that because those people didn't show up in clinics or for any further help, they have perhaps not developed cancer. And I mean your point about 70 plus year old women. Yeah, was it? 70 plus year old women? Yeah.

Speaker 3: 47:34

Have. So if you're over the age of 70 and you've screening, you know you've the chance of it being a false positive are way more than 50%. I think the thing is that I don't assume to know that we're doing the right or the wrong thing. I just think, if we're going to offer really drastic surgery to people, that we should know these answers. I would like to think that if I went to a clinic and I discovered that I had a cancer gene, I would like to know, you know what, if I don't have the surgery, what are the chances that you know you can be offered other things, such as serial MRI scans or a serial screening, and I want to know what exactly happened to all the women who've had the serial screening. But until you know the last year, there haven't really been very many studies in that at all.

Speaker 3: 48:29

I think what I'm trying to point to here is the unknowns and how. I don't know whether what's happening now is right or wrong, but this I do know, which is that as soon as we discovered the cancer gene, we realized we could do these surgeries, and then we just started doing them, and now we're potentially extending them to more people, and there's a lot of unanswered questions and all of the women it's anecdotal, I suppose, but all of the women I spoke to had the risk reducing surgery for cancer. The psychological impact of it was absolutely phenomenal in every one of them. Now, obviously, it was kind of a self-selected group. If you go out looking for stories, you will naturally attract the more tragic stories in a way, and maybe that there's loads of women who didn't find it as grueling. But I just feel like I think my worry here is that technology we're so excited about it that we allow it to overshadow everything and then we become frightened and we take action and we assume that things are working without fully testing them out.

Speaker 1: 49:37

I think that the thing that you said, that made me think a lot right now, and I don't know if you say it in the book, but of course we look at one set of genes but, one set of genes are coming with a million other genes, they somehow interact with those genes. The causality of these things is not as clean as we suggest, because we're so full of ourselves knowing everything and imagining that we have all this understanding right.

Speaker 3: 50:01

Yeah, I mean we've. So we've only been able to sequence a whole genome at speed in the last like 10 years.

Speaker 3: 50:07

So, this is like the. This is cutting edge, cutting edge, and they're now offering whole genome testing to newborn children. Now you imagine you put yourself in the position where you've just had a child and you're being told well, here's the most cutting edge of medicine that there is. You know, I think people feel that the responsible thing to do is if their child is offered a screening test, or most people will want to do the thing that feels like it's the best thing to do for their child.

Speaker 2: 50:35

But it may not feel like it's the best thing. It's an assumption. As you've said, it's a pressure. You said something about genetic testing. Lots of people are being given non-information as fact. More scientific research is needed before we release all these results that doctors don't even understand to patients.

Speaker 3: 50:53

Yeah, so are you saying that? You think it's not even that? I think I was thinking that people agree to things because they feel like they're doing by doing something they're doing the best thing for themselves. You feel they're under pressure.

Speaker 2: 51:05

I think that's an assumption even in itself. I remember, you know, like lots of mothers and parents, when I had a baby and there's little pinprick tests for various things, when I had a baby and there's little pinprick tests for various things, I remember feeling that was very invasive and I didn't really want him to have that, but I definitely didn't have a choice.

Speaker 3: 51:20

Yeah, yeah, You're right. Actually, You're absolutely right, Because I spoke to some people who were being screened for Down syndrome. So now it used to be that if you were screened for Down syndrome, you had the scan 12-week scan and then, if that was deemed high risk, then you had an amniocentesis, which is obviously a huge thing because it comes with risk of miscarriage and because it's invasive. So I don't think it's done casually at all. But now you can do something very similar with a maternal blood test where you can detect bits of the placenta in maternal blood and that tells you about the health of the baby. Is that the NIPT?

Speaker 1: 51:57

Yeah.

Speaker 3: 51:57

NIPT non-invasive prenatal testing and it's exactly as you just described is. I talked to parents who when that was offered to them they almost felt like it would be rude not to take it, or that it's the routinization. Now that we can do things easily and without being dangerous to anyone, it becomes so easily made routine. And I think, yeah, that's a real problem for medical professionals. Is well, now we I mean I don't know, do we even think sometimes about why we do the 12-week scan? You know it's become just a routine.

Speaker 3: 52:32

Part of it's not just about finding the sex of your baby. It's got other purposes. But if you can do something very, very easily, I think, like the heel prick test or this non-invasive prenatal testing, it's so easy for it to become routine. So, yeah, I think it's a mix. Some people accept testing because they think it's the very best thing for their family and for themselves, and other people just feel railroaded a little bit into it. Yeah, I'm sure that's right. The difficulty with all of this genetic testing on children is I'm not sure that we are being open enough with the general public about how little we understand about what the genetic code means.

Speaker 1: 53:13

Which was my point. Yeah, when you look at genes in isolation, obviously we know a few interactions between genes but it's such a complex machine it's so hard to say oh, you have these genes. Therefore, this is going to happen as a foregone conclusion.

Speaker 3: 53:27

I mean there's so many other factors at play. And it's interesting, there's a thing called the UK Biobank which is basically they just recruit lots of healthy adults I think they're between 40 and 60 when they're recruited and just follow their health but also take a whole lot of health data, including genetic testing, and loads of those healthy adults have been found to have kind of genetic susceptibility to diseases, but they never got the diseases, they never develop them yeah.

Speaker 3: 53:54

And that's the very first time that we've done that level of testing in healthy people. We've been doing testing in people with diseases and with family history of diseases for years but we don't routinely test healthy people. If I come back to the MRI example, you know when we do an MRI brain scan you know before the MRI brain you could only do a CAT scan. Cat scan is radiation, so you don't want to be subjecting people to unnecessary radiation. So we've never really kind of done loads of scans on healthy people. But now when we do an MRI scan it's almost unusual to get a result back that says you know, pristinely normal MRI.

Speaker 3: 54:30

I can see nothing here it's everybody has a little white spot somewhere or a cyst and that's just an MRI scan, the genetic code you know. We've only decoded. You know an absolute tiny fraction of it and we don't understand the meaning of most of the findings that we find, except in a very niche subgroup of people, and they're the people we've been testing for years. They're people with diseases and with family histories.

Speaker 2: 54:58

So that's progress. Then this group of 40 to 60-year-olds who are normal and healthy.

Speaker 3: 55:03

Yeah, I mean, that's telling us something at least, which is that we shouldn't overreact.

Speaker 2: 55:07

Which counter?

Speaker 3: 55:08

But it's science listening because, even as we know that we are, you know, all over the world there are are pre-testing programs for newborn babies, you know. So we both have this information, and well, this is what happens with tests. As I've said already, we just once we can do something we like to do it.

Speaker 3: 55:28

And at some point genetic testing will change our health future, when we can kind of treat genetic diseases. But we can't get there unless we do the testing. So if we suddenly stop doing all of this kind of wider testing we'll never learn anything. You know, we're in a bit of a quandary.

Speaker 1: 55:46

It's an unhappy valley and there's also seemingly sick people who have to pay bills, well-healthy people who may have defective genes that never actually become an illness, don't really really care and they don't pay any bills and they can't be charged for some medical examinations and other things.

Speaker 3: 56:02

I mean my worry always because I'm a neurologist who looks after people who have, well, mostly brain diseases. But a lot of people I see don't have brain diseases. They have what we call psychosomatic problems. So they're people who have disabilities that have risen out of kind of the stories that they've told themselves about their bodies.

Speaker 3: 56:20

And you know, that's where I always come to with people having all of these tests. You know we're told that. You know it's empowering. You know you can have a genetic study that assesses your risk of heart disease and diabetes etc. Later in life. Um, you're not guaranteed to get any of those diseases, but if you take action perhaps you can prevent it. Well, I love that theory. Once again, it sounds great, doesn't it? But first of all, we all know what we should be doing. Why aren't we doing it anyway? You know, I think that sometimes these kind of tests they just capture the people who are already quite motivated. They don't capture the people they should be capturing.

Speaker 3: 57:01

You know, because if you go and have a genetic test, you're probably already going to the gym and eating healthily and there's no actual evidence that anyone changes their lifestyle just because they know that they should. But the more important point to me is that the vast majority of the people who are at risk will never get the disease, and when I have this conversation with people, they always say well, you know. So what's the harm? What's the harm? You know, they've just been told to live more healthily. What's the harm?

Speaker 3: 57:30

The minute you tell someone they're at risk of disease, you turn a healthy person into a patient. Right, and that's where my interest in this always kind of comes back to is what happens to a person when you tell them that they're a patient. Well, it changes their relationship with their body. It changes their relationship with their health. It can potentially focus them on symptoms and make them anxious about them. You can disable someone by telling them they're at risk of something, and I just want people to keep in mind all the people who would have been fine if they never got this knowledge that we're all we're impacting very severely.

Speaker 1: 58:03

Absolutely. You do a really great job and having a complex conversation in a very nuanced fashion. I encountered this over diagnosis problem, alsoosis problem, also in real life and I think that's why it's such a timely book, because we see it everywhere around us and it's hard to address it, sometimes without especially if it's identity-driven address it with people. Any advice for us Luddites to have those conversations?

Speaker 3: 58:29

You know what. This is such a difficult conversation to have and I know that I'm saying a lot of things that I know for a fact other people are saying and have been saying for a long time, and I think it is a very difficult conversation to have. But I think where the conversation often goes wrong is this concept that people are complaining about nothing and that people it's a, you know, over-diagnosis is mistaken to be a dismissal, and that's very much where I think we can help by changing the conversation, because as soon as a person feels that their difficulties are being dismissed, then you know of course they're going to react against it. Why wouldn't they? They'd be quite right to do so.

Speaker 3: 59:10

I think it's important that we understand that the tendency to over-diagnose is A. It's well-intentioned, but importantly, it doesn't mean that we don't have problems in the world that we need to solve. We do need to stop people getting diabetes and hypertension and we do need to do a better job of supporting children in school to do a better job of supporting children in school, and I think we still need to find a way to address all those things. So I don't want anyone to feel that any of that has been taken away or neglected, or I want to go back in time in any way. I just would like to find a way to do that without turning people into patients.

Speaker 1: 59:53

That's great. Thanks so much for writing this very timely book, Susanna. I really enjoyed reading it.

Speaker 3: 59:59

Thanks for having me Appreciate it.

Speaker 2: 1:00:00

Thank you so much.